As shocked as I was that Emma brought up the topic of eugenics, it also seemed completely “expected” in the sense that Emma has frequently written about similar issues regarding parenting and autism. In many of her previous writings on the subject, Emma has sought to ease the fears of parents after their children are diagnosed with autism. With this conversation, it becomes more clear as to why she feels so highly motivated to show parents that an autistic mind is a wonderful mind and the prospect of having an autistic child could just as easily be looked upon as a “blessing” rather than a “curse.”

It is literally a matter of life and death.

I have no doubt whatsoever that tests will be created that can determine (with at least a reasonable amount of certainty) whether an embryo will develop autistic (or autistic-like) neurology. Having just returned from a weeklong conference on neurology and consciousness studies, where I listened to over 100 lectures by the top scientists in the field, I also have no doubt whatsoever that such a test will likely be developed within the next five years. The technological advances in this area are occurring at such an exponentially swift rate that it would be ten times more shocking if the “autism test” were NOT developed.

I have equal certainty that once a test like this is developed (particularly if it is a non-invasive blood test, which is also highly likely) that the results will be horrifyingly similar to what has occurred when fetuses test positive for Down Syndrome (DS) — a 90% abortion rate.

If you’ve ever spent a decent amount of time with a person with Down Syndrome, and you’re a reasonably intelligent, kind and compassionate person, you fully understand what a horrific disaster this is. When the “autism-test” becomes available–and it will–an equal disaster will likely occur, if we don’t effectively get the word out that autism is not to be feared, but should instead be embraced.

Here is a good article I just found on the topic and points the way to a more organized manner to produce and publicize an awareness campaign to counter the eugenics tragedy, in the absence of a more positive attitude toward autism and autistic people.

Very unfortunately, we live in an increasingly perfectionist society, particularly in America. Any American woman knows how difficult life became for her as a little girl, once she became aware of what society deemed: “the ideal woman.” Now little boys have to push the same boulder up the same hill, trying to get a stud-muffin six-pack hot-bod. Just look at the cover of any magazine that features any human being that is not part of a straight-news story.

It’s hard to be optimistic about the outcome regarding eugenics. People, being people, want the “best for their children.” And the “best” that’s being shoved down people’s throats is an impossible ideal. So wanting the “best for their children” often translates into wanting the “best children.” Depending on your cultural affiliation, the “best children” might mean tall, slim, blond hair and blue eyes. Or it might be highly intelligent, hard-working, caring, athletic, wealthy, powerful, dominant, sexy, persuasive, cunning or ruthless.

Perhaps all those traits will become “genetically selectable.” Will parents do it? Absolutely. How many? Lots. Will laws be imposed to stop them? Perhaps. Will those laws be broken? Absolutely. The big questions aren’t: “if” or “should you?” They are: “when” and “how much?” And with Autism Speaks sucking up 80% of the public discourse bandwidth, the generally accepted definition of “best children” continues to be: “children who are not-autistic.”

It’s hard to be optimistic about anything anymore. Like whether your children will ever see a living coral reef. But if you care, you have to try, and we really have to try very hard, and very quickly if there is any chance at all of turning the tide.

Emma’s Hope Book began as a search for “hope” in “helping” Emma to be a less-autistic person. It’s shameful for me to write that, but it’s the truth. Thanks to Ariane’s tireless quest to learn more about autism, she discovered the blogs of autistic people and suddenly our perspective shifted completely. Now Emma’s Hope Book is about hope with a capital H, not in air-quotes. It’s about the Hope of understanding and acceptance and respect and basic human rights. It’s about the Hope of reaching parents with children who are newly diagnosed with the “disease” or “disorder” of autism and suggesting an alternative perspective, so they may embrace and treasure the gift they’ve been given–and prevent the countless trauma-inflicting mistakes we made while we listened to the “Cure Autism Now!’ crew. It’s about the Hope of reaching the parents of autistic children who have already made many of the mistakes we’ve made and show them the power and beauty and wonder and joy of true acceptance–of learning that it is never too late to change–of learning that every day and every moment of every day counts.

Most importantly, Emma’s Hope Book is about the Hope of changing the world one person at a time through the kindness, compassion, joy, creativity, intelligence, insight and wisdom of Emma and all the autistic people like her (and unlike her) who share their thoughts, feelings, fears and hope with anyone who is willing to open their minds and listen:

“Know our understanding of what’s ideal constantly changes. Ideally one understands: to want a child is a desire without promise for sameness.” — Emma Zurcher-Long

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on. At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic. As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?” (I know, talk about asking the obvious…)

I am painfully aware that by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media. If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change. So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made. And what about those who do speak, are their feelings not important? These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear. Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.” I suggested. Once outside I asked Emma if she wanted to discuss the video Ari was referring to. Emma wrote, “The video has a mom who is lost and cannot rationalize hope.” Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.” Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced. Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”. I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful. But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me. After all today is World Autism Awareness Day.

I don’t look forward to April the way I once did. April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter. What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible. I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.

In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now). More fear. More anger. More calls for action. More listening to people who don’t know what they’re talking about. More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.

So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.

“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.” ~ Emma on the topic of the three stem cell treatments we did in 2010

Fear.

This post had to begin with Emma’s words.

I’ve written enough to fill a book on fear and where that took us. Stem cell treatments, spending all night on the internet searching for the next great “miracle” cure, taking my child from one specialist and doctor to the next, this is where fear took me. I’ve deleted a great many posts where I express my tortured fear, but if you go to the first post, the post that began this blog almost four years ago, you will see in excruciatingly slow detail where fear took me. Fear caused by those “alarming statistics” used ad nauseam by organizations like Autism Speaks, drives many like me to go to incredible lengths to “help” our child. Blinded by abject fear we pursue things that can cause our children real harm, both physical and emotional. The toll our fear can take on our children cannot be overstated.

I abhor Autism Speaks. As the single largest organization claiming to know what autism is and is not, and worse, suggesting they “speak” for autism and those who are Autistic, Autism Speaks does more damage to my Autistic child than any other. They have done a brilliant job marketing fear. For transparency’s sake they should rename their organization ~ Fear Autism. Donations pour in, large companies lulled into believing they are “helping” give their support. Autism Speaks uses so much of their vast resources to hurt my child and Autistic people with that fear; what little good they accomplish in other areas in no way can counter the long-lasting and devastating damage they have done and continue to do to families who live in the kind of fear we once did.

I’ve written a great deal about fear on this blog, such as this post where I wrote about what I once believed:

“What did the future hold for my daughter? How was she going to get through life? How would we be able to keep her safe? How would she fend for herself? Would she be able to fend for herself? Who would take care of her once we were gone? Fear. Fear. Fear and more fear. And then, without even realizing it, I would find myself furious. Enraged. And my rage found the perfect target. Autism. Autism was what I was furious with. Autism was what the problem was, so it stood to reason that if I could remove it, all would be well. So this is what I set out to do. Except that my daughter happened to be Autistic. But if I didn’t say it that way I could continue to separate the two. I could continue to tell myself I was fighting the autism and not her. I could continue to believe that my anger with autism would not affect her.”

“When my daughter was diagnosed with autism, my fear of institutions was the one fear, outstripped by any other, that brought me to my knees. For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died. It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments. For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal. It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world. Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.”

Richard and I live a very different life than we did just three years ago and it is all because we stopped being afraid. If you think, even for a second that we stopped finding ways to support our daughter, encourage her, cheer her on to be all she can be, then I encourage you to read the last six months of this blog. These last six months, specifically, show how Emma has increasingly taken over this blog, just as I once did not dare dream possible. It is her voice that sings out, every day a bit louder, every day more powerfully, every day…

Signal boosting. I love that phrase, it reminds me of a train yard. That’s the image that comes to mind when I write those two words. Signal boosting is when someone else shares a link or another’s writing either on a blog or on some other form of social media. It’s the single most appreciated and important tool, those of us who are not Autistic, can use to help amplify the words of those we support.

The other day I signal boosted a letter to the sponsors of Autism Speaks from ASAN, Autistic Self Advocacy Network, – you can read that letter ‘here‘, which outlines why they are asking sponsors to reconsider lending their support to Autism Speaks. I thought it was an excellent letter and as such, I decided to post it on my timeline on Facebook, with the heading, “For all who may be confused as to why so many are asking to boycott organizations that sponsor Autism Speaks, this is a wonderful explanation.” And that’s when the proverbial shit hit the fan. I’m not going to derail this post by going into the specifics of the comments I then received because I want to use this time to discuss Autism Speaks and why I object to what they are doing. Again ASAN’s letter is an excellent point by point summation of exactly this, but I will attempt to give my personal views and why I have come to believe as I do.

Many defenders of Autism Speaks point out all the “good” they have done and continue to do. They highlight insurance reform, their 100 day tool kit, autism awareness, spending millions of dollars on research, etc and yet, even if every single thing people who support Autism Speaks believe they are doing that is positive and helpful to Autistic people were true, (which I, for one, do not believe) it still does not take away from the fact that Autism Speaks does a great deal that hurts Autistic people and my child. Autism Speaks uses its power and massive reach to shape how the public views autism and autistic people. Suzanne Wright’s A Call for Action is a good example of this. She begins with –

“This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?”

“Went missing” furthers the misconception that our autistic children were once here, and now are gone. This idea is not helpful to anyone, least of all the parents who are new to a diagnosis and their young children. Nothing positive, absolutely nothing positive comes from this kind of language, in fact this is exactly the sort of thinking that had my husband and I pursuing all kinds of “cures” not so long ago. It was this thinking, that my daughter was buried beneath “autism” and that if I could just find a way to release her from its tortured grip, I would have done the noble thing, the right thing for my daughter. As painful as it all was, as terrified as we were, she would thank us later… this was my thinking.

And yet, none of this helped me find ways to help her communicate. Once we found a way to help her write and find her “voice” that was when the real miracles began to happen. Helping my daughter communicate is what she is thanking us for now, not all those so-called “cures” we traumatized her with. And please know, I mean that word, “traumatized” literally. You can read more about some of that trauma ‘here‘, ‘here‘ and ‘here‘.

“And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

“How long before they break?” Given that several parents have recently attempted and some have succeeded in killing their Autistic children, this language is particularly repugnant. This is not a call for action, it is a call for fear. It sets autism up as something to go to war against. It dismisses the horror of these crimes against their own children as something that is practically inevitable. It suggests that autism is the reason people would go to such extremes, but nowhere does Autism Speaks suggest it is the public perception, a perception they have had a massive hand in creating, that makes the lives of families and our Autistic children more difficult and yet I can tell you, it does. What they are doing, what they are saying is making my daughter’s life harder, not easier.

Those horrible ads (ransom notes) they posted all over New York City in 2007 and then took down because of the public outcry, the videos of parents who speak about their children, while their child is right there, but because their child does not speak it is assumed they cannot understand what others are saying… these are the things people believe, but that I have learned from my non-speaking Autistic friends and my daughter are simply not true. My daughter understands everything that is said around her and she is not alone. So many who do not speak have written about this, Ido, Naoki, Amy, Nick, Joey, Barb, Carly, Tito… too many to ignore or to dismiss as an anomaly.

In one video Autism Speaks produced a few years ago, the mother describes how she thinks about driving off the George Washington Bridge with her Autistic daughter in the back seat, the same daughter who goes over, numerous times, as her mother talks to the camera, to hug her. This video continues to haunt me. I no longer believe that child did not understand what her mother was saying. My daughter understood everything we said in front of her, even though at the time she gave no indication she did. I now know differently. What must it have been like to be that child, to hear your mother saying to a camera crew that she thinks about killing herself and you and that the only reason she does not is because of her other non autistic child? What would that be like to be that child?

These ad campaigns, these videos, these words, these “calls” for action DO have a huge impact on what people then think about autism, about Autistic people, about my daughter. People make assumptions about my daughter’s intellectual capabilities all the time. If you are curious to read some of what my daughter is writing these days, please click ‘here‘, ‘here‘ and ‘here‘. None of what she is writing is thanks to anything Autism Speaks has done. Autism Speaks absolutely impacts my daughter’s life, and they aren’t doing her any favors.

In the end, it doesn’t matter what good Autism Speaks has accomplished, until they really understand why so many are so angry, as long as they continue to not include Autistic people in any position of power, they will continue to be attacked by the very people they claim to represent. How long will it take? What will need to happen before Autism Speaks stops talking and LISTENS to those it keeps insisting it represents. So many Autistic people are furious. And so am I. All their power, resources, money couldbe used to do so much good for Autistic people, they could make such a difference in the lives of so many…

I stand beside my Autistic brothers and sisters and I will signal boost their words at every opportunity I get until they are able to take the microphone away from Autism Speaks and people begin to hear their voices. Their voices are what the public needs to hear, NOT Autism Speaks.

Image of Melanie Yergeau with a sign of a red X over a puzzle piece. To the left of the image are the words “people not puzzles”

*A quick note on today’s flashblog ~ This is Autism. In response to Suzanne Wright’s upsetting and fear-inducing letter entitled A Call for Action a Flashblog has been organized to take back the phrase “this is autism”, which Suzanne Wright used several times in her letter that was posted on Autism Speaks’ website, the organization she and her husband Bob Wright created eight years ago. Suzanne and Bob Wright and their organization’s beliefs are exactly what I hope my daughter never sees, hears or is confronted with, but that she feels the repercussions from on a daily basis.

I asked Emma if she wanted to write something for today’s post with the title, “This is Autism”. She wrote that, yes, she did. The following is what my daughter wrote, pointing to one letter at a time on a stencil board with a pencil.

After Ariane’s post What’s Wrong With Autism Speaks yesterday, I thought I’d throw my three cents in here. I didn’t know ANYTHING about autism when our daughter Emma was first diagnosed–except that it was BAD, very BAD and that I should be terrified. My wife went out and read most of the books written about autism at the time, mostly written by parents of autistic children documenting their torturous journey, many about the miracle cure they found that “cured” their child.

Like most guys, I Googled my ass off to try and bottom line the situation. And the news was BAD. My child was probably incapable of feeling empathy, of understanding sarcasm, of connecting with other people. Wow. Since Emma was making very little eye contact at the time and was not interested in cuddling or hugging, I thought this all had to be true. Poor Emma. Poor Ariane. Poor me.

I was told life would be difficult. Meltdowns, speech and language processing issues, OCD symptoms, toilet training. I watched horrifying videos like the ones made my Autism Speaks, (I won’t post links here, but they are on the other posts I linked to earlier if you want to get the crap scared out of yourself as well). I was told that a cure may be possible if we ponied up enough $ to Autism Speaks or TACA, so I opened my wallet. I was told about other miracle cures from casein-free, gluten-free diets, hyperbaric chambers, even stem cell therapy! We actually tried them all. We were so very desperate to “save” our daughter.

Then a true miracle happened. Ariane discovered the blogs of adult autistics who were telling a very different story. They DIDN’T want to be “cured.” Autism was part of who they were, as integral as any other component of their personalities. We were told that there were many advantages of autism: heightened senses, high intelligence, great analytic capabilities. I discovered all the famous inventors who were probably autistic.

Most importantly, we learned that what you see isn’t necessarily what you get.

We thought our daughter couldn’t understand what we were saying. Why? Because A) she didn’t react like she was listening B) she didn’t comment on what we were saying C) she never spoke about things like that herself and D) she didn’t seem capable of very much speech at all. But now that we have found new communication systems, it turns out Emma understands EVERYTHING we are saying and has AMAZING things to say about her world. She is HIGHLY intelligent (I suspect she is more intelligent than me). Her sense of humor is incredibly sophisticated. She thinks about some things we never considered at all and sees things in such a creative, unique way.

Live and learn. It took us SEVEN YEARS to realize these things. During that time, we really did think of our lives as tragic. And now I can see how much better all our lives would have been if we had received the right information about autism from the very start. Information that came directly from autistic people, rather than people who claimed to “Speak for Autism”. Information from the parents of autistic children who had also discovered the truth about autism from adult autistics. Parents who weren’t looking for a cure, but instead trying to help their children communicate more effectively and deal with the other issues that make life difficult.

It’s a brave new world for us. Thank god. “Better late than never” I keep repeating to myself. But better yet, my hope is that all children who are born autistic are lucky enough to have people around them who actually understand what this means, that don’t look at this as tragedy, who are ready to help in the best ways possible because they have truly useful information available to them.

And I have never seen any useful information come from Autism Speaks. Then again, if they had said something useful recently, I wouldn’t know because I stopped listening to a group that never speaks with the voice of actual autistic people.

Speaking of which, yesterday Emma had another writing session, which Ariane will post in full on her blog tomorrow. It is mind-blowing so don’t miss it. Here’s a preview: In the session before last, Emma was taught about an inventor of oil pumps for train steam engines. At the end of that session the teacher asked Emma to think about what she would want to invent. So yesterday the teacher asks her what would be a really great thing to invent. Emma’s response:

When my daughter was diagnosed, we heard about Autism Speaks. Their message supported everything else we were reading and hearing about autism, so I didn’t spend much time thinking about what they were saying or who they were involved with or even what they were doing with all the money they received. In fact, we gave money to them during those early years. When friends and family asked who they should donate money to, I encouraged them to give to Autism Speaks.

“Autism Speaks has a long and continued pattern of exclusion of Autistic voices from its work on autism. As an organization without a single Autistic person on its board of directors, Autism Speaks is the last group our nation’s leaders should be entrusting with the creation of a “national plan to address autism”. ~ ASAN (Autistic Self Advocacy Network)

“No reasonable person would dare suggest that an organization comprised entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.” ~ Lydia Brown, Autistic Hoya

I didn’t know.

“Only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services.” ~ ASAN, Before you Donate to Autism Speaks..

“Their slogan is “Autism Speaks to Washington.” It is neither “autism” nor Autistics who are doing the speaking, though.” ~ Paula Durbin-Westby

I didn’t know.

Autism Speaks has aligned themselves with the Judge Rotenberg Center, (read Autistic Hoya’s: An Unholy Alliance) a center that uses electric shock as an “aversive”. The Judge Rotenberg Center continues to accept “students” despite this video footage showing a young man being tortured.

For more about the Judge Rotenberg Center read Autistic Hoya’s post with dozens of links ‘here‘.

Bob and Suzanne Wright, whose grandson is Autistic created Autism Speaks in 2005. Since then Autism Speaks has become one of the most influential autism organizations in the world. What Autism Speaks does and says is often the first thing parents and people reading about autism hear.

“If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.” ~ Suzanne Wright’s A Call to Action

The problem with this kind of rhetoric is that it is not a “call to action” it is a call to terror. Terror that our children are “missing,” or have been “stolen,” or that if we are not careful any of our children will be “taken away” from us. It furthers the misconception about autism and likens it to a predator, a kidnapper who will steal our children from our loving arms.

This is not awareness, this is propaganda.

Autism Speaks is responsible for a number of public service announcements which show screaming children and their exhausted parents who talk to the camera about how hard it is to have an autistic child while those same children are present. I might have been one of those parents not so long ago. In fact I allowed a camera crew to come to our home several years ago and film us. The short film showed us sitting on our couch talking about our daughter as she sat beside me, (not realizing my daughter understood everything that I said, this is yet another of my many regrets) intercut with clips, I provided them with, of my daughter in full melt down. I have since asked that our interview and all clips of my daughter be removed and I am grateful they respected my wishes. The parents in the Autism Speaks videos are not so fortunate.

So many of us have supported organizations we thought were working toward positive change. We believed they were helping us, our children and Autistic people. We thought they had our children’s best interests in mind. We believed they were doing good, only to find we were wrong.

It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning. It no longer is a word of benign information, but instead is a word of caution and fear. I do not think this is a mistake. I know it’s cynical of me, but I think Autism Speaks, the single largest organization involved in Autism and the creator of the “Autism Awareness” campaign, chose their wording carefully. I’d like to think I’m giving them more credit than they deserve, but for a company that spends more on PR than they do on actually helping families and those who are Autistic, I don’t believe I am.

My awareness of autism has dramatically changed over the years. It has changed because of the information I’ve found and been given. In the beginning, my information came from books, autism organizations, various professionals, a couple of neurologists, our pediatrician; surprisingly the more “credentialed” the person was, the more likely they were to admit how little they actually knew about autism. In retrospect this was my first real lesson in awareness – beware of organizations and those who believe they “know” all about autism, whether that is the cause or which specific methodologies, treatments or therapies your child will be best served by, because they do not know, despite how vehemently and persuasively they may speak.

As time went on, I became increasingly aware of my own misery. The common misery supposedly shared by us parents, dominated the conversations surrounding autism. I became fixated on the “fact” that autism was the cause of my misery and set about removing it from all our lives. This is where awareness took me. This was what I knew and understood. But this is not the sort of awareness I want to be a part of. This is not the kind of information I wish I’d gotten, nor is it the information I hope other parents and families will receive. Those first few months after receiving the diagnosis are critical. How we talk about autism and by extension our Autistic child changes all that we then do and where we focus our energies.

Autism did not cause me to be miserable. I was concerned and I was scared, but my daughter’s neurology was factually not what frightened me, it was what I was being told about her neurology that terrified me. Had someone said to me when we were still trying to get her out of diapers when she was seven years old – “it’s going to be okay, here are a couple of different things you can try, but remember most people do get out of diapers, eventually” I would have felt a little calmer. Had someone said to us when our daughter was six years old, “read to her age appropriate material, teach her age appropriate lessons” I might have felt confused, I might have had a great many questions, but I wouldn’t have felt the fear I felt when we were informed she could not possibly be placed in a school with her same age peers. Had someone said to us when we first received her diagnosis, “presume competence, she can and will learn, but she will learn at a different pace, she will learn differently than you might expect” I might have felt concern, but I would not have felt the kind of despair I felt when I questioned whether she was capable of learning at all.

If we want to have more awareness about Autism then let’s have it come from those who are actually Autistic. Because if you are like me, these are the people who will change your views and shift your mind away from the “tragic” to the far more helpful information that might actually help you help your child. The kind of information that opened our minds to different forms of communicating, different ways of learning, all those things that have actually aided us in helping our daughter. Our judgments about her neurology and all it meant to us and her, did not help us do anything but feel more fearful and miserable.

Below is a small list of people I know and am in touch with. I’ve provided a link to their blog, book(s) or film to each of their names. I will feature more people who have helped me in my growing awareness during this month of April. I’ve separated those who can speak, but depending on the circumstances lose speech, with those who mostly do not speak, but ALL communicate. Want to become aware? Read their words.

I must interrupt my previously planned programming regarding the recording of Barb’s audio book, I might be you and mention the “light it up blue” campaign from Autism Speaks, as April is fast upon us. I know a great many, really well-meaning people will be “lighting it up blue” on at least one day in April, but I urge you to reconsider. For those of you who love reading links to other relevant posts on the topic, here you go…

Autism Acceptance Day ~ This blog was started by Paula Durbin-Westby and originally began as a way to counter the “awareness” that Autism Speaks suggests it is promoting.

Tone it Down Taupe This April!! ~ From Radical Neurodivergence Speaking an alternative to the “light it up blue” campaign! This is a MUST read and it’s also very funny.

For those of you who can’t cope with yet another link, let me try to explain. “Lighting it up blue” seems like a perfectly benign and thoughtful thing to do, yet what is meant as a token gesture of caring and thoughtfulness, is actually anything but that. Lighting it up blue is an ad campaign by Autism Speaks. It is less about bringing any real awareness about autism or the lives being led by those who are Autistic and everything about branding and promoting that brand that is Autism Speaks. It is a brilliant campaign. Most people who “light it up blue” believe they are showing solidarity and support to Autistic people. Most people would be shocked to know that Autism Speaks is the single most powerful organization promoting fear of autism by using language to describe autism as a “terrifying epidemic,” “a crisis” and Autistic people as “burdens” to society.

This quote is taken from Autism Speaks website:

“Acceptance
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism.”

This sentence encapsulates everything I once believed and thought about autism and my autistic child. This idea is incredibly destructive and insidious in it’s seemingly benign wording, but it is anything but that. If we separate out the person from their neurology, what do we have? How do we do that? What exactly does this mean? This sentence from Autism Speaks is exactly what is wrong with the organization. You cannot accept your child while NOT accepting their neurology. It is not possible. Yet this is exactly what I believed for many years to the detriment of my child’s well-being, to the detriment of her self-esteem, to the detriment of who and what she is. But I didn’t know that.

“Lighting it up blue” is not helping any of our children or those who are Autistic. The only one who is benefiting from this campaign is the organization who came up with it – Autism Speaks.

So before you head to the hardware store to find some blue light bulbs or open your check book, please, reconsider. Think how you would feel if this campaign was about your neurology. Because as Barb Rentenbach has so beautifully written in her book that I am currently recording the audio version for,

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke. This, in and of itself was significant. The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …”

“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”

Ari Ne’eman spoke last. His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.”

Ari spoke of those who are non-speaking Autistics, “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.”

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. ”

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help. So I waited. And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said. It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better? How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence? Is this how we want our children to feel? Do we really want our own children to feel their existence is called into question? Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels. Can we at least imagine what that would be like if this were done to us? Can we try, just for a moment to have the “empathy” needed to imagine? Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing? Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child? Our children will be adults one day, do we really want them to feel as so many Autistic adults do? Our children have feelings.

I’m one of those people who, when told to do something that doesn’t make sense or that I can’t figure out the reasoning behind the request, questions it. I don’t mean I think about it, while silently complying. I mean I question the thinking out loud as in, “Why are we taking 8th Avenue, when we could take 10th?” or “Why are they asking for the last four digits of my social security number when I just gave them my passport number and anyway it’s a domestic flight?” or “Why take the ice out first when we could just put everything on top and then scoop ice around it?” or any number of other questions that so easily slide from my brain to my mouth before I can stop myself.

I can’t help myself from asking, “Why?” By the way, I am also married to someone who does the EXACT same thing. Some people would call this controlling or being defiant, but I see it as a need to understand the reasoning. Sometimes when someone explains to me their reasoning, I get it, it makes sense and we can carry on, even if I don’t agree with it. But many times the person explains their reasoning, it still makes no sense and that’s when things get problematic. It is at this point I have a couple of choices, I can comply, do something that makes no sense to me, which is physically painful, it literally hurts to do whatever it is or I can refuse to do it while explaining why I cannot or I can ask for further clarification. I tend toward the last two options. I’m all about clarity. I’m really not trying to cause problems or be difficult, I really am interested in understanding another point of view.

There are other questions I have that have nothing to do with any requests being made of me, but the answers affect me or someone I love. Which brings me to a question that’s been very much on my mind recently. It’s a question that has nagged me since I read Lydia Brown’s piece – Protesting Autism Speaks on her blog Autistic Hoya – why don’t people who say they care about Autism want to hear from Autistic people directly? I’m actually being very serious with this question. I want to understand the thinking behind this. Because, you see, when I finally found Autistic people who were writing blogs, I felt like I’d hit the jack pot. When I read Julia Bascom’s blog Just Stimming it was like a beautiful universe unfolded before my eyes. When E. of The Third Glance reached out to me that first time I read her comment and literally wept with gratitude. I think I read her comment a dozen times. When I met Ibby of Tiny Grace Notes at the Disability Conference in New York City, she may as well have been the President of the United States, I was so thrilled. When she flapped because she was excited to meet me, I felt so completely flattered, it was all I could do not to jump up and down with unadulterated excitement. I felt profound relief because:

1) they are Autistic adults and until I found them, I personally knew none
2) they were describing their thought processes, their experiences, their lives and it gave me insight into how my daughter may be processing the world too
3) they introduced me to concepts I’d never considered, such as: Presuming competence and not speaking about my daughter as though she couldn’t understand, including my daughter in decisions that affect her and not speaking for her.
4) The whole idea of being talked about as inferior, as a deficit, as a tragedy and how that directly affected their self-esteem. This last seems so obvious in retrospect, but it was something I hadn’t considered.
5) Having relied on other parents and so-called “autism professionals” up until my daughter was 10 years old, I was incredibly grateful to meet Autistic adults who were able to explain the experience of being autistic first hand. Their experience has helped me help my daughter more than anything else I’ve read or been told.
6) Many of the autistic adults I now know aren’t that much older than my daughter and I found it comforting to know there is a whole community that she may one day choose to join.

I do not read or speak with my Autistic friends and assume they are speaking for Emma. I don’t assume Emma will grow up to be just like Julia or E. or Ibby or Chou Chou or Paula or Amy. Each of these women has helped me help Emma far more than any “autism professional” has. The Autistic men and women I know give me hope. Hope, not just for Emma, but for ALL our children. Hope for our world and our future. I feel grateful to them. I’m profoundly grateful that they’re blogging, speaking out, protesting, reaching out and asking to be heard. Maybe one day my daughter will be among them. I would hate to think that Emma, having worked so hard to communicate, in whatever way that may be when she’s an adult, having worked up the courage to ask a complete stranger, “Want to hear from me? Want to hear what I have to say?” would be answered with silence or an abrupt “No.” I cannot imagine how painful that must be. I cannot imagine what that does to one’s sense of self to be met with such outright hostility. And I don’t understand why.

I am seeing that my experience is not the experience of others. I do understand that, but why? Why don’t people see those who are Autistic and can communicate, whether by typing or speaking , as a good thing, as a hopeful thing? Why is it that some parents don’t want to hear from Autistics who can communicate? What am I missing here? Really, I want to understand this. Help me understand.

*A version of the following was sent to me a few weeks ago. This is about women fighting for the right to vote, but it could be the battle engaged by any group in the minority, including those who are Autistic fighting for the right to have a say in the policies that ultimately harm or help them. It is the same story, told over and over again. This post was inspired by Lydia Brown’s recent post, Protesting Autism Speaks on her blog Autistic Hoya where she recounts the response she received as she and others offered ASAN (Autistic Self Advocacy Network) flyers to Autism Speaks supporters and asked, “Would you like to hear from Autistic people?” only to be told “No” over and over again.

Less than 100 years ago women did not have the right to vote.

The 19th Amendment, ratified August 18, 1920, granted women the right to vote. Prior to that women marched and picketed as a way to bring attention to their cause. These tactics succeeded in raising awareness, but were often met with massive resistance and brutality.

On November 15, 1917, known as the “Night of Terror” when the prison warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they picketed the White House for the right to vote.

By the end of the night, many were barely alive. Forty prison guards wielding clubs and with their warden’s blessing went on a rampage against the 33 women convicted of “obstructing sidewalk traffic”.
One of those women was Lucy Burns. They beat her, chained her hands to the cell bars above her head and left her hanging all night.Dora Lewis
They threw Dora Lewis into a dark cell, smashed her head against an iron bed, knocking her out. Her cellmate, Alice Cosu, thinking Lewis dead, suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking and kicking the women.

Alice Paul
Alice Paul began a hunger strike so they tied her to a chair, forced a tube down her throat and poured liquid into her until she threw up. She was tortured for weeks until word was smuggled out to the press.

Edith Ainge

Voting is our right. It isn’t always convenient, we have to take off early from work, find childcare to watch our kids, stand in long lines, but it is our right. A right our grandmothers and great grandmothers did not have. It’s easy to take for granted that which we have grown up believing is a given. But it wasn’t always our right, and while it is doubtful it could ever be taken away, there are many in this world who still do not have that right even today.

Helena Hill Weed – Serving a 3-day sentence for carrying a banner saying, “Governments derive their just powers from the consent of the governed.”